Welcome to my blog created on Mother's Day 2010, after receiving a Stage3 BC diagnosis. If you are a new member of the Sisterhood of Cancerous Breasts, I bow to you Sister, you may want to read from the beginning. If you are already a Follower, thank you Dear Reader, for your sweet company. Come in, make yourself comfy, and I will tell you a story.
Update Nov 2018: I’m part of a new sorority now. Always wanted to go to Club Med, not Club Met! It’s back and so I’m back! Stay tuned!

Friday, February 1, 2019

Make Empathy Great Again, Part 2 of 2

So where did we leave off? Oh yeah. The bone biopsy. Shiver me timbers, it's in me bones. Aaarrrggggggghhh she says like a pirate.

I went to a large reputable East bay hospital aka John Muir to have the biopsy done. I had considered having it done at Stanford but even the oncologist there said it would be perfectly fine to have it done locally instead of having to drive to Stanford.

I was told not to eat or drink anything for the twelve hours prior to the procedure and checked in with my Hubby. He's my designated driver, my backup and my blankie. Thank you Husband. In sickness and in health.

I was shown to a hospital room and prepared for the procedure. An IV was inserted, after a bit of wrangling over where the best spot on my arm was. First of all, due to the risk of lymphedema*, I never get poked in my left arm. I always use the right. I'll admit, I'm not an easy stick. I even had an anesthesiologist tell me I'm a harder stick than a preemie. I even once had an IV in my neck because the anesthesiologist (also John Muir) couldn't get the stick in my right arm and he was angry I wouldn't let him use my left arm. I had the puncture sites on my neck to prove it.

See all those? Pokes in my neck from a frustrated anesthesiologist. 2011

(* What's lymphedema? When you've had lymph nodes removed, which is often the case during a cancer surgery, it affects that area of the body trying to circulate lymph fluid. As a result, you can get extreme swelling. Since I had lymph nodes removed from underneath my left armpit, next to my cancerous breast, I was instructed to not use my left arm for needle sticks, blood pressure etc.)

Ok where was I? I've learned from years now of sticks where my best spot is on my right arm. It's not dead center at the elbow. It's slightly to the left towards my body, it is not a convenient spot for them but it works. I had to convince many a nurse of this. After continuing to search for a vein in areas I told her she wouldn't find one, she finally agreed and got me in one stick to start an IV. Folks, as a cancer patient, when somebody gets you in one stick, it's like a ticker tape parade with people cheering and confetti flying. Most times you have to advocate for yourself though. Some of the medical staff think they know better than you do about your own body. It's often a battle to be heard and listened to, even by the people whose job it is to give you the best care possible.

The nurse asked me if I was in any pain. I said 'No just psychic pain." She didn't even laugh. Come on Lady, work with me, I've worked hard on this material.

They finally came in to wheel my bed with me in it into the procedure room. I kissed Husband goodbye and made the trip in the bed, down halls into an elevator and then into the room. There was quite a bit of hustle and bustle in the room. Two nurses, two CT techs and I think some others behind a glass wall where they could view what the CT was showing. They'd use the CT to guide the needle to get a core sample from the bone. Oh have I mentioned yet which bone? My L1 vertebra. I'd have to lay on my stomach and they'd take a sample from there. With what you ask Dear Reader? A needle that's also a drill. Gulp. Whimper whimper. Somebunny help me!

The radiologist who would perform the procedure had not yet arrived as I was being prepped, the usual stuff they do. Hooked up to a blood pressure machine, and electrodes everywhere to measure heart rate and stuff. I noticed they were going to put the blood pressure cuff right next to the IV in my right arm.

'Um excuse me, I've had an IV blown before because it was put over an IV. I have finicky veins. Can you place it somewhere else?"

'It'll be fine,' she looked at me like 'Lady this isn't my first rodeo ok, let me do my job.'

I insisted. She didn't listen. She put the cuff on and started pumping it. I could feel the pressure and the IV really hurting. I told them emphatically. Finally the other nurse said "OK lets move it, we can place it on her leg.' I was relieved when they did. I didn't feel like having to get a new IV started. Yes I've had that happen before; see above photo that led to neck IV.

As I was laying there, in a hospital gown and hospital pants, I was starting to feel very anxious. It's really hard to do these procedures. I don't know what's harder, when you do know what to expect or when you don't know what to expect. I heard the two CT scan techs, both men, discussing what kit they needed; it appeared one was training the other.

I was getting nervous as I heard them discuss getting the "bone marrow kit." Hmmm. I was puzzled. I thought I was having a bone biopsy, not bone marrow biopsy. They continued to discuss the kit, the gauge size of the needle and so on, all things a patient does not want to hear. I felt like a mannequin laying there on the table. Mannequins have no feelings. No brain. No nothing. I wasn't a person. I wasn't a survivor. Nothing.

I spoke up. 'Excuse me but I'm not having a bone marrow biopsy, I'm having a bone biopsy.' The CT techs did not reply, seemed rather surprised I was talking to them. The nurse came over and said "Didn't you have a bone marrow transplant?'

Now I don't curse a lot in my out loud conversations, but since my cancer ordeal I am known to curse like a drunken sailor a lot in my own head.

'An effing bone marrow transplant, am I in the right effing room? WTF?' she says in her head.

I answered out loud. 'No I didn't, I'm a breast cancer survivor and I'm here to have a bone biopsy.' They must have looked on the chart a little more, but still the techs hadn't really changed anything around from what I could tell. We got the message that the radiologist was running a little late from another procedure but was coming in ten more minutes.

It was time for me to switch from the bed and onto the procedure table. I figured once the radiologist came in I'd make sure I was in the right place having the correct procedure done. I was getting really anxious now. I got onto the table to lay flat on my tummy. One of the techs came over and said 'We'll try and make you comfortable, you will be awake but we'll give you lidocaine.'

'Debbie to blond brain, Debbie to blond brain, Holy shit, lidocaine, you're going to put a drilling needle in me and you think lidocaine is going to do the trick? Mommmmyyyyyyyy. Jesuuuuuuusssss.' In my head I started calling on all my higher powers, hoping they would forgive the language.

'In your IV we'll also give you something to make you more comfortable but you will be awake during the procedure.' Ok ok I relaxed a bit. I got this. I got this. YOU GOT THIS GIRL.

Everyone continued their little personal conversations and as I lay there, the other tech, who had not even introduced himself, begins to open the back of my hospital gown and tug at the back of my hospital pants. His big hands pulled down the back of my pants to expose my upper butt, and I was startled.

It just hurt my feelings and it made me angry. Would it have been so out of line for one of the female nurses to do this? I mean he didn't even introduce himself to me. I hadn't even looked at his face yet. It was upsetting to me. Very upsetting.

Despite my extroverted personality, I'm pretty shy and modest when it comes to having male medical staff. It makes me nervous. I have usually always chosen female doctors. I've had a few things happen in my childhood, teen years and even later as an adult; I just don't feel comfortable with a strange man's hands on me. Even if he is medical staff. My plastic surgeon at Stanford was a huge exception for me. He instantly and every single visit made me feel so comfortable and he is extremely considerate, gentle, and very aware about being respectful with a female patient. He was my exception. Thank you Dr. Gordon Lee.

So as this nameless faceless tech was rubbing what I assume was betadine all over my back and buttocks area, I held back tears. Others in the room carried on chatting and he did his job. I felt very sad and alone and scared and like I was there to get my oil changed or something. It was so impersonal while being so personal.

I wanted to scream. 'Don't you people get what I am going through right now? Do you understand I am a breast cancer survivor, that I spent a year in cancer camp, had countless surgeries and have been cancer free over eight years? Don't you get that this test may reveal if my cancer has returned and has now spread? I may very likely be going from Stage 3 to Stage 4, not to mention, THERE IS NO EFFING STAGE 5?'

Look of course I don't expect to be cuddled and sang to and have a story read to me prior to a procedure like this, but I do expect empathy for my suffering, for my past history, and for what this current test may reveal. And of course, the fear and pain of the actual test. Can I get a little empathy here please? A little kindess? A little TLC? Is it too much to ask for some sensitivity from male medical staff when they are touching my body in personal places?

From this patient's perspective, this is how it should have gone. Everyone who was present and part of the procedure should greet me by name and introduce themselves to me. The procedure I'm there for should be discussed and confirmed. It should be clear how much discomfort I'll have and what they plan to do about it. How long will the procedure last? And maybe, maybe just a little pat pat even if just on my hand as if to say 'There there now Mrs. Clay, everything is going to be ok.'

I'm a pretty tough little cookie, but that doesn't mean I'm wonder woman, that doesn't mean I don't have feelings, that doesn't mean I wasn't afraid. I feel I could have been handled a whole lot better.

Just then the radiologist comes in, introduces himself to me then tells the tech's "You have the wrong kit. We're doing a bone biopsy today."

Enough said.

Radiologist now asks the techs to call pathology and ask how large a sample do they want. They call and get his answer. I can hear them discussing then I hear radiologist say 'Well I plan on getting the biggest sample I can."

'DO I REALLY NEED TO HEAR ALL THIS? SHEESHUS HOW BIG A SAMPLE ARE WE TALKING ABOUT...' then I hear radiologist say "OK Mrs. Clay get ready for some pressure in your back...'

Now this ain't my first rodeo, I know when they say pressure, they really mean PAIN, and in goes the lidocaine needle in several spots towards the small of my back. I'm wondering why the drip drip drip of the IV didn't make that easier. Now it's time for the biopsy needle otherwise known as a freakin drill.

In it goes, you got this Girl, you got this Girl. I hear myself groan loudly. It hurt so bad. I DON'T GOT THIS. I DON'T GOT THIS. I don't know if they upped my meds at that point, I don't remember a whole lot cause I was praying my guts out, repeating the Lord's prayer in my head a thousand times as I felt the needle go in deeper, lots more pressure and pain, and then I heard the drill.

god help me. god help me. I just can't do this shit anymore. I just can't. That's it folks. I'm outta here, I just can't do this shit anymore. I wondered if God forgives major cursing during a prayer, if not, I'm really screwed.

Then it was done. I lay there. Like the proverbial wet noodle that just got my ass kicked. I wanted to cry. I think I did. I heard the radiologist say he got as big a sample as he possibly could. I was done. It took a bit of time to unhook me from all the electronics and BP cuff and get me back into the rolling bed. I don't know how long it was before I was taken back to my room.

A completely different nurse came in to check on me after I was delivered. I don't know if they were going through a shift change or what, but then another nurse came in after that one and took over. I wanted to just crawl into my Husband's arms and have him rock me like a little baby and tell me you are a brave brave girl and I love you and you did it, it's over.

I just lay there. My back hurt. Mostly though, my feelings were hurt. And I was angry.

If you are in the medical field and do not have a heart for service, you're in the wrong business. If difficult procedures on patients are just regular ol duty for you and you have no empathy, you're in the wrong business. If you are a hospital administrator and you don't provide your employees with regular empathy and sensitivity training, you are doing your patients and your staff a disservice. If you are medical staff who is the opposite sex of your patient, please use the utmost sensitivity when handling that patient.

3 comments:

Once again, Deb I am compelled to follow your blog. You having been six months or so ahead of me in my own cancer journey were such an inspiration to be strong and vulnerable at the same time. Thank you for your heart felt account and sharing with us. My prayers are with you. God hears us. He gave you the strength and intelligence to handle your ordeal. Your gift of writing is a blessing for me.

This is such an excruciating read. I can’t believe what you have to go through for a biopsy. How awful that you are just an object to them. I hope this is the only one you will ever need. My God Deb,this was horrible.

When problems are seen as opportunities, adversity seen as a good education, and the belief that every single thing that happens in your life is connected to a larger unfolding good, no more problems, just transformation, embracing this fragile glorious imperfect life where every step, even the wrong step, is on the path and leads to growth and grace. So chill baby. You got this. writergirldreams